Sixteen years ago, Suzanne Phillips of Auckley was told she had a disease she had never even heard of, and was given two to five years to live.
But although devastated by the prognosis, and the thought that she would never see her two boys, then aged seven and nine, reach maturity, she determined to keep living life as fully as she was able, for as long as she was able.
Then aged 36, Suzanne is now 52, and an acclaimed author. The Spellbound Chronicles is a pacey fantasy story for children of eight years and above, involving time travel and adventure
She hopes to encourage others who find themselves struck by illness or unexpected circumstance, in the way that she has been.
Suzanne explained: “My first symptoms were weakness in my arms….I was struggling to lift things and could think of no reason why this should be.
“My GP sent me to the Royal Hallamshire Hospital in Sheffield for tests and they were thorough….I had needles poked in my throat, I had a lumbar puncture, an MRI, even a muscle biopsy.
“Four months later I was told I had motor neurone disease and it was the first time I had heard of it.
“I received the two to five years prognosis and all I could think of was how much time I had with my boys. My dreams of the future, growing old and being a grandparent, were all swept away. Nothing was the same from that moment on.”
But Suzanne has beaten all the odds and although she admits she has her moments, usually when quiet and alone, she is thriving and busy, with future plans.
With very close family, and engaged to be married to Lee Chetwynd, she said: “I would put my longevity down to two main things, one being amazing support from my family and the medical teams, and the other simply remaining positive.
“One of the professors at the Hallamshire said a positive mindset does indeed make a difference in the health of people who have motor neurone disease, as ‘giving up’ seems to allow it to progress more rapidly.
“The research team in Sheffield are working on MND, Parkinsons and Alzheimer’s Disease in a specific unit, as the conditions are all closely related”, she added.
“There is some great work being done there as they search for a cure. Currently there is no cure for motor neurone disease.
“I had a conversation with a woman I met in a lift at the Frenchgate Centre. On hearing I had MND, she said, well it could be worse, as you could have cancer.
“I explained that some cancer diagnoses can be better than one of MND. People just don’t know about it unless they have come in to specific contact. I was one of them.”
Suzanne began writing as a healing therapy, finding she could ‘lose herself’ as she concentrated and developed her story.
“I was able to forget my MND for a while. I hope it inspires others in my position to realise that your life doesn’t end at that moment of diagnosis. My writing is also to leave a legacy for my boys, Aron and Lance. That’s what I had in mind.”
Suzanne’s books are set partly in Doncaster, and also in nearby Sherwood Forest, where she and mum Eve both attended a book signing, at the Robin Hood Festival, recently.
“My mum lives next door and has contributed her own characters to the books, and also did a great job of editing,” laughed Suzanne.
“My first book, Bloodline, was well received and the newest version of my second, Trinity, will be out by Christmas.”
Suzanne’s work can be found in Waterstones bookstores and on Amazon, and raises money for the research of the Motor Neurone Disease Association, of which Suzanne is now “humbled” to be patron.
She is still writing, still driving, and is mostly limited with her motor skills in such instances as cutting up food, when she might need additional help, or in carrying, or opening items.
“I do have occasional falls and have had visits to A&E departments,” she admitted.
“I feel I am a bit of a mystery to the doctors. They all know me on first name terms and they often get a hug on my visits, which are now twice a year.
“I deliberately put weight on as there can be sudden debilitating drops in weight with MND,
“A friend of mine, who is sadly no longer with us, dropped 40 pounds in two weeks. That’s how sudden it can be.”
Suzanne reverts to her maiden name of McGuire for her writing.
She is grateful to have found such an outlet, and that her work can help to raise vital cash for research.
She added: “I’m completely humbled to be a patron of MNDA. They are a brilliant team who look after and support people with MND in so many ways.”